2024 The Canadian Sarcoma Research and Clinical Collaboration (CanSaRCC) Progress Update Advancing a National Database for Sarcoma Research Impact Report
A Letter of Thanks On behalf of the entire team at the Canadian Sarcoma Research and Clinical Collaboration (CanSaRCC), we would like to extend a heartfelt thank you for your generosity in supporting our work. In a very real sense, CanSaRCC is a passion project. It is built on the passion of doctors, scientists, patients, loved ones and — crucially — donors like you, who are all united in the belief that collaboration is the key to beating sarcoma. With your support, in just a few short years CanSaRCC has grown from an ambitious idea into a national research network that is powering advances in our understanding of sarcoma. Institutions from coast to coast are now pooling information on cases into a single national database. This is vital, as there are currently no reliable statistics on even the total number of patients diagnosed with each of the 70-plus subtypes of sarcoma in Canada. Creating this database is a huge undertaking, with enormous effort going into ensuring accuracy and data quality. We have also expanded our network to include pediatric centres, making the CanSaRCC database a vital resource for research into sarcomas in children, adolescents and young adults. Your generosity is also enabling us to raise awareness of sarcoma with the next generation of doctors and scientists. Our mentorship program has so far supported more than 20 young people – including undergraduate, graduate and medical school students, as well as young clinician scientists and medical Fellows. This program provides them with vital experiences in scientific research, inspiring an interest in sarcoma that they will carry with them into their future careers. With data on over 5,000 cases and a network of more than 100 doctors, scientists and other research and clinical professionals, CanSaRCC is already an invaluable research platform — and it will continue to be for years to come. We do not yet know what breakthroughs will happen in the future, but we can be certain this database will play a major role in improving our understanding of sarcoma in Canada. Thank you for all your support. Dr. Abha A. Gupta Hagit Peretz Soroka, Ph.D. Clinician Investigator, CanSaRCC Director Scientific Associate and Program Manager, CanSaRCC Princess Margaret Cancer Centre Princess Margaret Cancer Centre
SARCOMA Meeting the Challenge of a Rare Form of Cancer Sarcoma flies beneath the radar. Despite Terry Fox, Canada’s most famous cancer patient, having sarcoma, the disease remains unfamiliar to the public and few physicians have specialist knowledge of it. Sarcoma is a group of cancers of the soft tissues and bone. It can be found in any part of the body, including in the blood vessels, fat cells, nerves, muscles, tendons and bones. According to the Canadian Cancer Society, this year 1,700 people will be diagnosed with sarcoma. In addition to the shock of being diagnosed with cancer, many of these patients will face a struggle to find accurate information about their condition and access evidence-based treatment that draws on the latest research. The CanSaRCC program aims to change that. Dr. Abha Gupta Dr. Abha Gupta was, until recently, the sole sarcoma specialist in Canada who treated patients of all age groups, from birth to older adults. This extensive experience has endowed her with the ability to implement a multidimensional approach in devising personalized treatment plans for each patient. Moreover, having dedicated years to working with adolescents and young adults, she meticulously considers various factors, including fertility and quality of life, in her treatment strategies. Terry Fox on his Marathon of Hope in 1980. His right leg was amputated because of osteogenic sarcoma. Image: Terry Fox Foundation
A National Collaboration to Advance Sarcoma Care Sarcoma is known in medicine as an “orphan disease.” It accounts for fewer than 1% of adult and 15% of childhood cancers but has more than 70 different subtypes, which can vary dramatically in where they appear, how they behave and whether they respond to treatment. Because each subtype is rare, research is often poorly funded and hampered by a lack of data. CanSaRCC was founded to address this problem by building a network of scientists and clinicians to engage in meaningful scientific collaborations. Four years after its creation, CanSaRCC has grown into a national engine that is powering scientific research across Canada and advancing knowledge of sarcoma. Driving Science with Data CanSaRCC’s work is focused on building a national database of sarcoma cases. Twenty member organizations across the country have come together to pool information from consenting patients into the database. The aim is to capture high-quality information about every case in Canada, with data linked to a virtual biobank of tissues, blood samples and cell lines. This data is a crucial asset that researchers can draw on in their work. Among its uses are: • Research into the biology of sarcomas, such as how they arise and develop. • Identifying genetic mutations linked to the disease, which could potentially be targeted by new therapies. • Furthering our understanding of patient outcomes, especially for rare subtypes. • Designing clinical trials of potential new treatments to assess realistic trial feasibility and identify the ideal inclusive cohort of patients for novel drugs. Created for Patients by a Patient CanSaRCC was inspired by Patrick Wilson, a young man who was diagnosed with rhabdomyosarcoma, a rare type of sarcoma, at age 18. During his treatment, he discovered that there was no national database and biobank that includes all rhabdomyosarcoma patients and their clinical data. He decided to raise money with the help of his grandfather, Michael H. Wilson, a former Minister of Finance of Canada. Their seed donation established CanSaRCC and extended Patrick’s original idea to include all sarcoma subtypes.
• CanSaRCC at a Glance 20 Member Organizations Across Canada British Columbia Ontario • B.C. Children’s Hospital • Princess Margaret Cancer Centre • B.C. Cancer Agency • Sinai Health System • The Hospital for Sick Children Alberta • Ottawa Hospital • Tom Baker Cancer Centre • Alberta Children’s Hospital Québec • Cross Cancer Institute • CHU Sainte-Justine • Stollery Children’s Hospital • Hôpital Maisonneuve-Rosemount • McGill University Health Centre Saskatchewan • Centre hospitalier de l’Université de • Saskatchewan Cancer Agency Montréal • Saskatchewan Health Authority/ • CHU de Québec — Université Laval Jim Pattison Children’s Hospital • CHU de Québec — Mére-enfant soleil Manitoba Nova Scotia • CancerCare Manitoba • Nova Scotia Health Authority • Adult centres • Pediatric centres • Combined adult & pediatric centres 6,000 patients in database “CanSaRCC connects a rare disease population coast to coast and provides a basis for national cohorts for multidisciplinary research and clinical trials.” – Dr. Shantanu Banerjii Cancer Care Manitoba Sarcoma Committee Co-Chair, Canadian Clinical Trials Group 20 research projects 100+ professional members 20,000 website visitors
Rapid Progress Thanks to the generous support of our donors, CanSaRCC has quickly grown from an idea into the first national research platform for sarcoma in Canada. We have assembled a strong team of doctors and scientists, including a steering committee, director, program manager, coordinator, research students, volunteers and medical Fellows, a financial oversight committee, as well as fundraising and legal advisors. Together, we have built a program that now includes: • A database with detailed and reliable information about thousands of sarcoma cases. • A virtual biobank of biological samples that are a vital resource for research. • A tool for identifying clinical trials relevant to sarcoma. • A multidisciplinary student mentorship program to spread knowledge of sarcoma among the next generation of clinicians and scientists. • Educational modules to ensure precise data entry. • Legal contracts and ethics protocols. • A public-facing website to raise awareness of sarcoma research: cansarcc.ca • A comprehensive data dictionary and case studies to ensure all users across Canada enter data the same way. • Tools for efficient data cleansing, data mapping and analysis. Expanding into Pediatrics Sarcoma is the only adult solid cancer that is more common in children and adolescents — in fact, it comprises 15% of pediatric cancers. CanSaRCC recently expanded its membership to include eight pediatric healthcare centres, and we hope to add more in the future. The data provided by these new centres will be vital in enabling researchers to better understand childhood sarcomas. By comparing data from adult and pediatric patients, scientists will be able to determine how the disease differs in younger people and if and how treatment plans should be adjusted to reflect this. “The intensity of sarcoma and its treatment makes it a psychologically demanding illness that has an impact on both the affected person and the family and friends around them. “CanSaRCC uniquely fills a gap for patients and their loved ones, by providing resources, networking and memorial spaces for those affected, to their great benefit.” – Dr. Jon Hunter Psychiatrist, Sinai Health System, Professor and Pencer Chair in Applied General Psychiatry
MEET A PATIENT & DONOR ‘My goal every day is to make a difference’ - David Poulin Here is an infectious optimism about David Poulin. “I’m the one out of a million,” he says, with a broad smile that belies the subject at hand. David is not talking about a lottery win or an unusual talent. He is talking about cancer. He has epithelioid hemangioendothelioma (EHE), an incredibly rare type of sarcoma that arises in the cells of the blood vessels. He is not exaggerating when he says he is one in a million. “There is a spectrum of EHE. It can move very fast, but it can also remain there for decades,” says David. “So, I have chosen that I will live with it for 25 years — and I hope that will be the case.” Today, David has reached a point where he can approach his cancer with a positive mindset. But the early days after his diagnosis in 2018 were a different story. T
When a cancer is so rare that all the patients in Canada could fit on a single school bus, even oncologists do not have answers to many basic questions. Though David received the best care possible throughout six operations at several hospitals — and continues to have regular screening checkups — no doctor or surgeon could claim to be an expert in his cancer. “It was tough to feel at peace because nobody could say: ‘You’re in good hands, we’ll take care of you.’” David found a sense of community and information about his disease through Facebook groups and a support organization in the U.S. As he started to learn more about sarcomas and EHE, he became interested in supporting more research. As a successful businessman, David was able to make a substantial donation to advance the first national EHE research in Canada. He is supporting CanSaRCC through a national study led by Dr. Albiruni Abdul Razak, a Clinician Investigator at The Princess Margaret, which aims to better understand the demographics of EHE patients, analyze treatment patterns, look for potential biomarkers that could help guide treatment, and identify potential targets for new treatments. By supporting this research, David hopes he can help patients with EHE everywhere. “When you have a disease, every day is important. So now my goal every day is to make a difference and do my best.” “When I see the research, my hope goes up, and I keep fighting. I keep believing that one of these days, a breakthrough may happen.” David Poulin, pictured with this wife, Sophie Paradis.
Powering Research The information in the CanSaRCC database is a valuable asset for medical science and translational research. Researchers across Canada are using the rich and detailed data to seek answers to countless questions about the best approaches to the diagnosis and treatment of sarcomas. This year the CanSaRCC team engaged in more than 10 active projects. Recent Publications Extra-Pleural Pneumonectomy in Children and Adults with Advanced Sarcoma What it looked at: A surgical technique known as EPP for treating advanced disease that involves removing certain tissues in the chest. What it found: EPP is a viable option when used with chemotherapy. The authors recommended that doctors consider it as an option in their treatment plans. Published in: Current Oncology Radiation-Induced Sarcoma in Survivors of Childhood Cancer What it looked at: In rare instances, radiation treatment for one type of cancer can lead to the development of bone or softtissue sarcoma in the same area, sometimes many years later. Researchers used the CanSaRCC database to find such cases and compare their characteristics. What it found: Radiation-induced sarcoma is a serious late effect in people who received radiotherapy as children, and it requires a specialized multidisciplinary team to mitigate it. Published in: Cancer Reports
The Impact of Surgical Resection Margins on Outcomes for Adults with Head and Neck Osteosarcomas What it looked at: Outcomes after surgery for adults with bone sarcomas in the head or neck. The researchers reviewed 50 cases in the CanSaRCC database. What it found: Cases where the surgeon had removed the tumour with a 3-milimetre buffer of normal tissue surrounding it had better outcomes. This finding will help inform surgical best practices for these tumours. Published in: Oral Oncology Descriptive Study for Radiation-Induced Sarcoma What it looked at: Factors that indicated the likely outcome for patients with radiation-induced sarcoma, using data in the CanSaRCC database. What it found: Delivering chemotherapy before surgery was effective at reducing the size of the sarcoma in some patients. Published in: Therapeutic Advances in Medical Oncology Real-World Experience of Tyrosine Kinase Inhibitors in Children and Adult Patients with Recurrent Bone Tumours What it looked at: The effectiveness of two drugs (regorafenib and cabozantinib) in treating patients with recurrent bone tumours, using data from the CanSaRCC registry. What it found: The drugs showed meaningful activity against the tumours and had tolerable side effects. The authors recommended research into whether they should be used earlier in treatment plans. Published in: Cancer Medicine
IN THEIR OWN WORDS Meet Our Students Great research rests on good data. But there is intense pressure for resources in cancer centres, and we found that many struggle to record case information in the CanSaRCC national database. Our solution: develop a student mentorship program to perform this critical task. Our students are drawn from diverse backgrounds and study numerous disciplines, including engineering, psychology and biomedical sciences. Working with CanSaRCC is an exciting opportunity for these young people. They gain valuable experience in clinical and research work and receive academic recognition, mentorship and job shadowing opportunities that help them develop their career goals. Just as importantly, the students develop an understanding of sarcoma that they will carry with them throughout their professional lives. Michelle Jude Michael Western University, studying Anatomy and Interdisciplinary Sciences I started with CanSaRCC in May last year and the experience has changed my whole perspective on research. During the summer I did the mentorship program and got to work on a project on a type of sarcoma called epithelioid hemangioendothelioma (EHE) that forms in the cells lining the blood vessels. As part of the mentorship program, I shadowed Dr. Gupta. The main takeaway from my shadowing experience is my new understanding of the close connection between research and medical care, especially when I see Dr. Gupta refer to literature when developing a patient’s treatment plan. It was also incredible to see the bond of trust that Dr. Gupta developed with her patients. Her job is complex and difficult, and not easy emotionally. I have gained a lot of empathy for physicians throughout this process. Working alongside Dr. Peretz Soroka on a daily basis has been an incredibly enriching experience. Under her guidance I have been delving into the intricacies of various sarcoma subtypes, with a particular focus on EHE. This journey has illuminated the critical importance of discovering treatments and enhancing life expectancy, underscoring the profound impact our research can have. “CanSaRCC has provided me with knowledge and life skills that no university can provide. It gives us insight into the medical field and the ability to apply our knowledge.”
Dr. Peretz Soroka has generously provided me with numerous opportunities to spearhead the EHE project, allowing me to engage in fruitful discussions with research staff from across Canada during meetings. This experience not only enabled me to enhance my initiative and communication skills, but also afforded me the privilege of interacting with highly knowledgeable individuals from across Canada. I am truly grateful for the vital growth that Dr. Peretz Soroka has facilitated in my professional journey. All of these experiences are invaluable to me as I apply for medical schools. They have also slightly changed my path. I thought I wanted to be a family physician, but now I have become interested in research and would like to do a medical degree and PhD. If there is one thing CanSaRCC has taught me, it is the value of scientific research. Anisha Rakkar McMaster University, studying for Master’s in Global Health Sarcoma has been a big presence in my life. My father passed away from this rare form of cancer and my sister now has it. When you are dealing with sarcoma as a family, you are in a kind of bubble and focused on your own dynamic. Working with CanSaRCC and meeting patients has been an incredible opportunity for me to see how other families cope. It has also been so inspiring to see just how many scientists and physicians are passionate about this disease and working to find new treatments for sarcoma, because there are still only limited options. Through my work with patients at CanSaRCC, I have also discovered that I love communicating about science. I have applied to medical school — and hopefully I will get in — but I think as long as I am able to communicate science and create meaningful connections, I will find that fulfilling, whether that is a career in research or in medicine. “Working with CanSaRCC and meeting patients has been an incredible opportunity for me to see how other families are dealing with sarcoma.”
Caroline Rodrigues University of Toronto, studying for Master’s in Biotechnology, specializing in Digital Health Technology Over the course of four years, first as a research student and later as a research assistant, my time with CanSaRCC has afforded me valuable experience in clinical research, patient interactionand health data privacy guidelines under the guidance of Dr. Peretz Soroka. I also had the opportunity to shadow Dr. Gupta in her clinic and attend weekly question meetings with senior members of the research team. Early in my academic career, I was less aware of the different career paths that were available to me beyond clinical research and medicine. This program allowed me to enhance my understanding of the courses I was enrolled in by exposing me to a new form of learning. CanSaRCC helped me solidify my interest in digital health by allowing me to further develop skills in data analysis, communication and program development. Additionally, my involvement in helping to build and oversee the Student Mentorship Program at both local and national levels contributed to the development of my management skills. The most unique aspect of this program is the personalized mentoring provided by Dr. Peretz Soroka, who works with each student to develop a plan that aligns with our future academic goals. Caroline Ruus University of British Columbia, studying Genetics and Physiology When I was five, I was diagnosed with a tumour in my kidney. So I have always had a personal connection to cancer. I was treated at the BC Children’s Hospital, where I am currently working under the supervision of CanSaRCC principal investigator Dr. Rebecca Deyell. I have been supporting a study into a technique called Whole Abdominal Radiotherapy in children and young adults with sarcoma. I had the opportunity to be involved in the planning for the study and now I am assisting with the data entry and research paper. CanSaRCC is an incredible opportunity for undergrad students to be involved with the collection and interpretation of medical data such as clinical notes, imaging reports, chemotherapy roadmaps and radiation summaries. “Learning about individual patient stories has taught me about the importance of empathy, respect and professionalism in medicine.” “CanSaRCC has given me the opportunity to be involved in the research process from start to finish, nurturing my interest in biological and medical sciences and allowing me to develop my skills.”
Research fundamentals Exposure to clinical care Long-term skills Career choices Graduate/ medical school The mentorship program in CanSaRCC has also truly been incredible. It has given me great insight into how the medical field works. I was able to attend tumour board meetings and see how doctors collaborate to improve patient treatments. I am planning to write the medical admission exam this summer and then, hopefully, I can apply to medical school. My experiences have made me passionate about pediatric oncology and research, which I hope to pursue. CanSaRCC Mentorship Pathway Clinical Fellows Over the past year, CanSaRCC has helped support the clinical research work of seven Clinical Fellows. Our last report featured Fellow Dr. Mauricio F. Ribeiro and we are happy to report that he recently accepted a position as a medical oncologist at the Moffitt Cancer Center in Florida. The publications and knowledge on big data that he gained with CanSaRCC were essential parts of his application. This year we would like to present Clinical and Research Fellow Dr. Sharon Tzelnick. Dr. Tzelnick completed her Master’s of Public Health in 2012 and graduated with a medical degree in 2013 from the Ben-Gurion University of the Negev in Israel. She completed residency training in the Department of OtolaryngologyHead and Neck Surgery at the Rabin Medical Center and at the University of Tel Aviv. In 2021 she began a Research Fellowship in the Guided Therapeutics Lab at the TECHNA Institute and Princess Margaret Cancer Centre. Dr. Tzelnick then completed a Clinical Fellowship in head and neck surgical oncology and microvascular reconstructive surgery at The Princess Margaret in July 2023. Working with CanSaRCC allowed her to complete and publish research within her field of study. Dr. Tzelnick is currently a Clinician Assistant in the Department of Head and Neck Surgery.
Office/Courier Address 700 University Avenue, 4th Floor, Toronto, ON M5G 1Z5 T 416.946.6560 / 1.866.224.6560 F 416.946.6563 Mailing Address 610 University Avenue, Toronto, ON M5G 2M9 To learn how you can help Charitable Organization No. 88900 7597 RR0001 conquer cancer visit thepmcf.ca Thank You On behalf of the entire CanSaRCC team, I would like to thank you for supporting this vital research initiative. CanSaRCC is a remarkable program that has succeeded in building a community of dedicated and passionate doctors and scientists across Canada. By collaborating and pooling their knowledge and expertise, CanSaRCC researchers are making advances that would not be possible for any one institution acting alone. Through your support for a database that will be used by countless researchers for years to come, you are multiplying the impact of your donation. The work you are supporting today will improve the lives of patients throughout the country now and well into the future. Thank you.
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